How My Autoimmune Conditions Taught Me to Take Infection Risks (Other Than COVID-19) Seriously

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After I was diagnosed with rheumatoid arthritis (RA) in late 2007, it didn’t take me long to learn that meant I’d be managing various levels of pain and fatigue for the rest of my life.

What I didn’t know then was that I’d also have to learn how to manage ongoing infection risks that come with having an autoimmune condition and taking medications that affect the immune system to treat it.

A Crash Course in Infection Risks

I think it’s important for people with inflammatory or autoimmune conditions (which include conditions such as ankylosing spondylitis, psoriatic arthritis, type 1 diabetes, and lupus) to know three basic things about infections and symptoms.

First, the underlying inflammation from our conditions can lead to a chronic, low-grade fever, so we may not realize when something else is going on.

Second, our confused immune systems can get so busy attacking otherwise healthy cells as though they were foreign germs that they don’t fight as well against real threats like bacterial, viral, and fungal infections. This is what makes our immune systems “compromised” and less likely to put up a fight against threats using normal responses like fever or swelling.

On top of that, if we do contract an infection, we can have a higher risk of developing serious complications.

Third, the medications we take to control symptoms, tamp down inflammation, and limit disease progression (such as corticosteroids and disease-modifying antirheumatic drugs, or DMARDs) also suppress our immune response. If we get an infection, these medications could prevent our bodies from mounting as effective a response against it. For example, I take adalimumab (Humira) for my rheumatoid arthritis and ankylosing spondylitis so I have to be extra conscious of my infection risks and do what I can to mitigate them.

If symptoms like fever and inflammation aren’t obvious in the early stages of infection, we run the risk of an infection taking hold more deeply and affecting other parts of the body before we even know there’s a problem.

This can mean we unknowingly delay seeking treatment.

My “Big C”: Not Cancer, But Cryptococcosis

I got my first big infection scare about eight months after I was diagnosed with RA. My symptoms weren’t under control despite taking methotrexate, prednisolone, and anti-inflammatory drugs. I was in the process of applying for a clinical trial for a new RA treatment and I had a chest X-ray for tuberculosis as part of the trial’s screening process.

The X-ray showed a lump in my lung that looked like it could be cancerous.

So instead of starting the trial for the RA drug, I had a series of scans plus a lung biopsy to figure out  what it was. Not knowing what was going on was extremely stressful, to say the least. The results were conflicting, so I had lung surgery within weeks to remove the lump. It wasn’t until several days later they determined that it was a cryptococcal nodule.

“A crypto-what?” I hear you say. That’s what I said, too.

Not only did I have a serious lung condition, it sounded like something that was strong enough to kill Superman. I soon learned that cryptococcosis is the disease caused by inhaling the fungus cryptococcus. This is one infection most healthy people are unlikely to encounter.

This fungus is found naturally in soil and in the droppings of many bird species. Most people breathe it in and out all the time without it causing any problems. It can even sit dormant in the body indefinitely. Like all fungi, cryptococcus happens to like warm, dark, and moist places — like the lungs.

If someone with a very weak immune system (such as people with HIV/AIDS) happens to breathe in this fungus or already has it in their system when their immune system crashes, the fungus can form nodules, plaques, or ulcers within organs or it can get into the bloodstream. The symptoms can be similar to those of meningococcal disease (see below for more information about this condition) but may not appear for some time.

I was genuinely lucky that the fungus was detected and removed before it had time to do damage. For example, it could have led to cryptococcal meningitis but, thankfully, I dodged that bullet. My lung has since healed and, after a few months of antibiotics and several years of antifungal medication, I no longer have a risk of it returning.

Here are some other common (and less common) infections I’ve had to watch out for because of my autoimmune conditions.

Respiratory infections, like cold and flu

Some people can shake off the common cold in a few days. If I am really lucky, I can get on top of it quickly. However, once it sets in, that’s it. A mere cold can hang around for weeks and often leads to upper respiratory infections for me.

Cold and flu symptoms can appear similar but are caused by different viruses. Flu symptoms are generally more intense and more likely to lead to serious complications. Pneumonia, bronchitis, and sinus infections are just some of the more serious complications that can develop following cold and flu infections. These usually require courses of antibiotics to help our immune systems overcome them. This can also be problematic as we may develop resistance to specific antibiotics over time.

I’m a huge advocate for flu vaccines as I know that people with autoimmune conditions can be very sick for months if they get infected with flu.

Urinary tract infections (UTIs)

If you’ve ever had one of these, you’ll know they are NOT pleasant. UTIs can cause a burning sensation when you pee and they can quickly spread up through the urethra into the bladder, causing abdominal pain. They can make your urine stinky, cloudy, and sometimes pink if there is blood in your urine. UTIs can be triggered by many things, including medication that makes you retain urine. Research has shown rheumatoid arthritis is linked with a higher-than-expected incidence of UTIs, especially in people who take steroid medications long-term.

Candidiasis

Candidiasis is a type of infection caused by the spread of the fungal yeast candida. Candida occurs naturally on our skin and within our bodies. Some species of candida can cause infections by excessive growth of the fungus in warm, moist areas of the body, such as the mouth, throat, gut, genitals, and folds of the skin.

Candidiasis happens when healthy bacteria levels are disrupted or the immune system is compromised. Factors include the recent use of antibiotics, having diabetes, or taking oral contraceptives. Drugs such as prednisone or other immunosuppressants can also disturb the natural balance of microorganisms in your body and lead to infections. There are three main kinds of candidiasis.

• Oral candidiasis symptoms include white patches on the inner surfaces of the mouth and throat, pain while eating or swallowing, and a loss of taste.
• Genital candidiasis is more common in women but it can also occur in men. Common symptoms include redness, itchiness, pain during intercourse, a thick, white discharge, and splits in the genital skin.
• Invasive candidiasis occurs when candida travels into the bloodstream or internal organs. The resulting infection can cause serious symptoms throughout the body. Risk factors are similar to the other types of candidiasis but can also include recent surgeries, prolonged time spent in intensive care, or the use of a central venous catheter.

Candidiasis has also been known to cause fatigue, joint pain, digestive issues, and nail infections. It can generally be treated with over-the-counter or prescription drugs. A diet that promotes the growth of “good” gut bacteria can also help.

Tinea

Tinea is a kind of fungal infection of the scalp, arms, legs, face, and torso, also known as ringworm (due to the ring-shaped, scaly patches that form). Tinea infections that form on the genitals, feet, or nails are not ring-shaped, so they are not usually referred to as ringworm.

Regardless of the body part affected, tinea can be very uncomfortable and unsightly. It’s a good idea to start treatment as soon as you are aware of the infection and there are many topical anti-fungal treatments available over the counter. If they don’t work, see your primary care physician as soon as possible. As with candidiasis, steroid medications may make you more prone to these infections and probiotics may help you keep them at bay.

Staphylococcal infections

Staphylococcus (staph) bacteria are found naturally on our skin and in our noses and we can sometimes pass them on to others. They often do no harm but, if they happen to find their way inside us, they can cause infections throughout the body, including in the bloodstream, bones, lungs, heart valves, and on the skin.

Of particular concern to people with arthritis is that staphylococcal infections can take hold following joint replacements or washouts (the flushing out of a joint with a saline solution to clear out infections or loose bodies). If you are immunocompromised and you need surgery, your health care team will likely be on high alert and take extra measures to keep you safe.

Cellulitis

Cellulitis is another infection that can be triggered when either staphylococcus or streptococcus (strep) bacteria travel into the deep layers of skin and sometimes into the bloodstream (when it can become life-threatening). Signs and symptoms include swelling, redness, pain, and tenderness in the affected area. Some people also develop blisters, chills, fevers, and nausea.

My husband has psoriasis (another autoimmune condition), which he treats with an immunosuppressant medication. Over the last few years, he has had several bouts of cellulitis resulting from (relatively minor) cuts on his legs and arms. Within hours, the whole area develops a dark rash and we’ve learned to get him straight to a primary care practitioner for an antibiotic injection followed by several more over a few days. We didn’t do that the first time and he had to have IV antibiotic infusions over several weeks to stop the infection spreading further.

Meningococcal disease

The bacteria that cause most cases of meningococcal disease are common and live naturally at the back of the nose and throat. They can be transmitted though close personal contact (such as kissing) but, for most of us, the immune system passes them off as harmless. Some viruses can also trigger meningococcal disease, including herpes, measles, and HIV. More rarely, it can also be triggered by fungal infections such as candida, cryptococcus, and histoplasma or a parasitic infection.

Most people make a full recovery from the disease. However, some (including those with compromised immune systems) may have ongoing health issues and the disease can be fatal if not treated urgently.

• Meningococcal meningitis is a serious infection of the meninges (the membranes surrounding the brain and spinal cord). Symptoms include high fever, headaches, irritability, confusion, and increased sensitivity to light.
• Meningococcal septicemia is a form of blood poisoning that causes blood fluid to leak into the skin and organs. This reduces the flow of blood throughout the body. Symptoms are similar to those of meningitis and can also include cold hands and feet, achy muscles, and body rashes.

We can reduce our risk of contracting meningococcal disease in much the same way as we do other contagious conditions. Thankfully, many of us have probably received a meningococcal vaccine through childhood immunization programs, but this doesn’t eliminate our risk entirely.

Wounds

We need our immune systems to kick into action quickly when we get injured to reduce the likelihood of infections such as tetanus or septicemia (including meningococcal septicemia). Dysfunctional immune systems can struggle to fight the germs that enter our body which means they can take hold more rapidly and the wounds can take longer to heal than normal.

If you get even a minor wound like a cut or bite, be sure to apply appropriate first aid as quickly as possible.

Mouth infections

There is a two-way connection between autoimmune diseases and oral infections. Oral symptoms are often an early manifestation of autoimmune diseases such as systemic lupus erythematosus (SLE) and Sjogren’s syndrome. It has also been shown that people with rheumatoid arthritis may be predisposed to developing periodontitis, while periodontal disease-associated bacteria has been proposed to contribute to the development of rheumatoid arthritis.

Periodontitis is a serious infection that attacks the soft tissue of the gum. If it spreads, it can lead to tooth loss or damage the bone that supports the teeth. It can be caused by poor dental hygiene as well as untreated sores in the mouth.

Tooth abscesses are (often painful) infections that occur in different parts of the tooth, including at the tip of the root. Causes, risks, and treatments are similar to those of other oral infections.

Medications used to suppress the immune system (such as methotrexate) can also make us more prone to oral infections such as candida and cold sores. Methotrexate is also known to sometimes cause mouth ulcers.

The long-term use of drugs such as prednisolone can cause tooth structures to weaken and form cracks and cavities.

For example, I broke a tooth a few years ago and it was cutting my tongue — very painful. I could have paid a small fortune to get it fixed privately, however, in Australia, we have a subsidized public dental service for people on government pensions. (I am on a disability pension.) I was told that there was an 18-month waiting list to get the tooth fixed or removed, but when I said that I was on immunosuppressants and had a high risk of infection, the answer changed immediately. I had an appointment at the emergency department of the dental hospital at 9 a.m. the next day.

This all shows how important it is to have regular dental check-ups and tell your dentist about your conditions and medications. They may be able to prioritize treatment for you in some cases.

Cryptosporidiosis

Cryptosporidiosis is a highly contagious diarrheal disease caused by a parasite called cryptosporidium. This tiny organism can live in human or animal intestines and can be transmitted via infected stools. It is a common cause of waterborne diseases throughout the world (including the U.S.) and is resistant to some disinfectant products.

Taking diarrhea medication and drinking lots of (clean) water can help ease symptoms but you will probably need to see a doctor for advanced treatment. Unfortunately, immunosuppressed people may not completely get rid of this parasite and the condition may reoccur if your immune system becomes weak again. I haven’t encountered this disease yet and hope never to do so.

COVID-19

Now for the big one.

We all now know that this coronavirus starts with droplets from an infected person’s cough, sneeze, or breath. It can enter our system through the eyes, nose, or mouth and, from there, it can travel deep into the lungs where it latches onto healthy cells and penetrates them.

Some people may only get cold or flu-like symptoms but others may develop shortness of breath followed by acute respiratory distress syndrome (ARDS). This causes fluid to build up in your lungs and restricts oxygen getting to your organs and may quickly become fatal.

How do people with autoimmune conditions or who take immunosuppressant medications fare if infected with COVID-19?

The research into this answer is ongoing, but based on what we know so far, it seems like factors like age and other medical conditions (comorbidities such as diabetes, heart disease, lung disease, or others) are playing a bigger role in COVID-19 complications than merely having an underlying inflammatory or rheumatic condition. One exception is taking steroid medication, which has been associated with higher rates of hospitalization and intensive care.

Complicating things further, there’s evidence that some of the inflammation-fighting medications we take, such as certain biologics, may help treat COVID-19 because of the rampant inflammation the coronavirus can cause throughout the body.

But this is still an ongoing area of study and it will take more time and data before we have a true picture of how autoimmune patients are affected.

Read more here about what we know so far about COVID-19 and the risks for inflammatory arthritis and autoimmune patients.

How I Manage My Infection Risks

Having personally experienced some of the above infections (or seen people I know with compromised immune systems experience them) I’ve been careful about how I manage my risks.

The biggest choice I’ve made is to stay on my medications even though they potentially increase my risk of developing infections. I weighed that up against the strong likelihood of increased disease progression and more severe symptoms from my rheumatoid arthritis and ankylosing spondylitis if I don’t take medications to suppress my immune system. For me, that’s a far greater concern and I’ll take the medications any day.

With that in mind, there are some things I do to mitigate my infection risks. They include paying attention to my body so I know what my version of normal is. I check my skin regularly (especially in the crevices, nail beds, and on the soles of my feet) for signs of fungal or bacterial infections.

I now know what my early symptoms of infections like UTIs, thrush, or sinus infections feel and look like for me. When they surface, I head straight to my primary care doctor. If needed, they put me on appropriate antibiotics and I follow their dosage instructions religiously. I’m conscious of the dangers of antibiotic resistance so I only take them when they confirm I have an infection that needs to be treated.

We also discuss whether or not I should pause taking my immunosuppressants, but I’ve rarely needed to do that.

If I do have a contagious bug I try to stay at home as much as possible until it clears and I avoid contact with others when I know they are sick. Most of my close friends and family know about my increased infection risks so they try to do the right thing to help protect me. Not all of them realized that I would have an increased risk of severe disease from COVID-19 but they’ve generally respected my wishes once I explained it to them. (Even though there are far fewer cases of COVID-19 in Australia than in countries like the U.S., the virus is still active here.)

My advice to others is, if you do notice anything unusual or any symptoms of possible infection, take appropriate action as soon as possible. Don’t let a minor inconvenience become life-threatening.

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